Research project A contradictory parenthood
Malin Ljungbergs thesis is about “Living conditions, strategies and caregiving among parents who co-reside with an autistic adult child who are not in employment, in education or vocational training (NEET).
Parents of younger autistic children report extended responsibilities for caregiving, lower quality of life, and higher rates of stress, compared to other groups, even though there is a special welfare system that is specifically designed for the targetgroup in Sweden. When a grown-up child (18-29 years) lives at home and doesn’t have work or studies, parents need consent to be an active part in the young adult contact with support- and health care systems. This raises questions about how parents experience caregiving and living conditions and what strategies they use to navigate their everyday life.
The thesis is a compilation thesis with an explorative and cumulative design with an objective to deepen the understanding and create knowledge about the living conditions and strategies of parents who co-reside with an adult autistic child (18-29 years old) who is unemployed, not in education or vocational training. The first study is a scoping review that aims to synthesize existing knowledge about parental experiences of caregiving. Based on the result from the scoping review, an interview guide will be created. The interviews will explore parents’ experiences and stories about their situation, including institutional practices of juridical rights and obligations and structural conditions such as social support, socioeconomic status related to caregiving, and offered support-, care, and health care efforts. The second study investigates what kind of coping strategies and parenting strategies they use to make their everyday life work. The last study explores the objective and subjective consequences and the extent of caregiving regarding both time and money and the experience of the impact of the care on quality of life.